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Kaiser Permanente Research Bank available to researchers

me/cfs 27931

Guest
Messages
1,294
I wanted to raise awareness that Kaiser Permanente has a DNA bank from patient blood and saliva available to researchers. I'm a participant.

Apparently, any researcher can apply for the data.

From their website - http://kp.org/researchbank
DNA Could Help the KP Research Bank Discover New Ways to Prevent Disease

What causes diseases like cancer, asthma, and Alzheimer’s? What are the impacts of lifestyle and history on a person’s risk of disease? Scientists working with the Kaiser Permanente (KP) Research Bank are using DNA and other information to find new ways to help people live healthier lives.

What Could this Research Mean?

It could lead to breakthroughs in ways to prevent or treat diseases. In the future, patients may receive health care based on their individual DNA, environmental, and lifestyle information. DNA information could be used to:
  • Test earlier for diseases;
  • Prescribe the most effective medicines;
  • Better understand the warning signs of disease;
  • Predict the risk of getting a disease;
  • Understand new ways to prevent disease.
Thousands of KP members have agreed to participate in the KP Research Bank and to provide DNA and health information for health-related research. Researchers need to collect DNA from people of all ages, genders, ethnicities, and backgrounds so discoveries can benefit even more people.
I'd love to see my DNA used to help find a test, treatment or cure for ME/CFS.

PS: I was a Kaiser Permanente patient for 17 years before I finally got diagnosed with ME/CFS. I had to personally walk into my Kaiser doctor's office with a copy of the Institute of Medicine Report before he would believe this disease and my symptoms were real and not psychological. After diagnosis, Kaiser offered no treatment. After diagnosis, I was told by some Kaiser doctors that I'm a fraud and that my neuro symptoms aren't real.
 

IreneF

Senior Member
Messages
1,552
Location
San Francisco
I wanted to raise awareness that Kaiser Permanente has a DNA bank from patient blood and saliva available to researchers. I'm a participant.

Apparently, any researcher can apply for the data.

From their website - http://kp.org/researchbank

I'd love to see my DNA used to help find a test, treatment or cure for ME/CFS.

PS: I was a Kaiser Permanente patient for 17 years before I finally got diagnosed with ME/CFS. I had to personally walk into my Kaiser doctor's office with a copy of the Institute of Medicine Report before he would believe this disease and my symptoms were real and not psychological. After diagnosis, Kaiser offered no treatment. After diagnosis, I was told by some Kaiser doctors that I'm a fraud and that my neuro symptoms aren't real.
Wonderful. Kaiser is one of the few options we have now for medical insurance. Which Kaiser? I'm in SF.
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
I wanted to raise awareness that Kaiser Permanente has a DNA bank from patient blood and saliva available to researchers. I'm a participant.

Apparently, any researcher can apply for the data.

From their website - http://kp.org/researchbank

I'd love to see my DNA used to help find a test, treatment or cure for ME/CFS.

PS: I was a Kaiser Permanente patient for 17 years before I finally got diagnosed with ME/CFS. I had to personally walk into my Kaiser doctor's office with a copy of the Institute of Medicine Report before he would believe this disease and my symptoms were real and not psychological. After diagnosis, Kaiser offered no treatment. After diagnosis, I was told by some Kaiser doctors that I'm a fraud and that my neuro symptoms aren't real.

Is your Dr named Kaiser? Do you mean Kaiser Ins. Co. Denied you Treatment? Not sure why you would expect an Insurance company to offer you Treatment advice or protocol?

GG
 
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me/cfs 27931

Guest
Messages
1,294
Is your Dr named Kaiser as? Do you mean Kaiser Ins. Co. Denied you Treatment? Not sure why you would expect an Insurance company to offer you Treatment advice or protocol.

GG
It's very common here for people to refer to Kaiser Permanente simply as "Kaiser". I apologize for lack of clarity.

I think it's reasonable to expect my Kaiser Permanente doctors to offer some kind of ME/CFS/SEID treatment, even if only for symptoms. Is this an unreasonable expectation?
 
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*GG*

senior member
Messages
6,389
Location
Concord, NH
It's very common here for people to refer to Kaiser Permanente simply as "Kaiser". I apologize for lack of clarity.

I think it's reasonable to expect my Kaiser Permanente doctors to offer some kind of ME/CFS/SEID treatment, even if only for symptoms. Is this an unreasonable expectation?

Yeah, your Drs should treat your symptoms at least. Meds for sleep, your thyroid perhaps etc..

GG
 

Mary

Moderator Resource
Messages
17,321
Location
Southern California
Kaiser is an HMO. All I've ever received from an HMO doctor is blood pressure and cholesterol checked, the very basics, drive-through medicine. Actually I did have one doctor several years ago who was with Scan who was willing to work with me - he was young and intelligent but unfortunately I moved. On the whole I've found HMOs to be useless. I have straight Medicare, no supplemental or Medicare advantage plan, and am able to see most doctors with this. It would be nice to have the supplemental plan (not an HMO) but it's not worth it for me - there's so little doctors can do and so I don't see them very often.

However, I am very glad Kaiser is willing to make its dna database available to researchers.
 

me/cfs 27931

Guest
Messages
1,294
Yeah, your Drs should treat your symptoms at least. Meds for sleep, your thyroid perhaps etc..

GG
Pretty much all I was prescribed for 10 years was exercise and various stimulants. This significantly worsened my symptoms.

I was prescribed Lunesta then Ambien for sleep, but reacted badly to both and had to discontinue. According to my sleep test, I do not have sleep apnea, so am not eligible for CPAP. I have no pain to treat. Thyroid tests are normal.

My primary care doctor has no clue about treating ME/CFS, but I keep him because he is one of the few that recognizes ME/CFS is a physical disease. This is really the best I can hope for at this HMO. Most doctors I have encountered at Kaiser Permanente believe ME/CFS to be a primarily psychological disorder. The only ME/CFS literate doctor I have encountered is my liver specialist!

I would like to see something positive for ME/CFS come out of Kaiser Permanente for a change. Would be great to see researchers use their data.
 
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*GG*

senior member
Messages
6,389
Location
Concord, NH
Pretty much all I was prescribed for 10 years was exercise and various stimulants. This significantly worsened my symptoms.

I was prescribed Lunesta then Ambien for sleep, but reacted badly to both and had to discontinue. According to my sleep test, I do not have sleep apnea, so am not eligible for CPAP. I have no pain to treat. Thyroid tests are normal.

I would like to see something positive for ME/CFS come out of Kaiser Permanente for a change. Would be great to see researchers use their data.

How about Remeron or Trazadone etc for sleep? Bad reactions to those meds?

GG
 

me/cfs 27931

Guest
Messages
1,294
How about Remeron or Trazadone etc for sleep? Bad reactions to those meds?

GG
Had a very bad reaction to Remeron about 20 years ago. Trazadone has never given quality sleep for more than 4 or 5 hours, and the benefit gradually wears off after a few months. It's been 15 years since I've taken Trazadone or Serzone.

My sleep is much better recently. My chronic sinusitis cleared up soon after starting Valtrex and low dose naltrexone (prescribed by a non-Kaiser doctor) and now I breathe much better. Sleep is no longer a major health issue for me.